Literature DB >> 26547555

Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens' Health.

Annibale Biggeri1,2, Mariachiara Tallacchini3.   

Abstract

The different and seemingly unrelated practices of Information and Communication Technologies (ICT) used to collect and share personal and scientific data within networked communities, and the organized storage of human genetic samples and information-namely biobanking-have merged with another recent epistemic and social phenomenon, namely scientists and citizens collaborating as "peers" in creating knowledge (or peer-production of knowledge). These different dimensions can be found in joint initiatives where scientists-and-citizens use genetic information and ICT as powerful ways to gain more control over their health and the environment. While this kind of initiative usually takes place only after rights have been infringed (or are put at risk)-as the two cases presented in the paper show-collaborative scientists-and-citizens' knowledge should be institutionally allowed to complement and corroborate official knowledge-supporting policies.

Entities:  

Keywords:  Biobanks; Health and environment; ICT; Peer-production of knowledge

Mesh:

Year:  2015        PMID: 26547555     DOI: 10.1007/s11948-015-9686-5

Source DB:  PubMed          Journal:  Sci Eng Ethics        ISSN: 1353-3452            Impact factor:   3.525


  19 in total

1.  Ethical aspects of human tissue banking.

Authors: 
Journal:  Politics Life Sci       Date:  1998-09

Review 2.  From genetic privacy to open consent.

Authors:  Jeantine E Lunshof; Ruth Chadwick; Daniel B Vorhaus; George M Church
Journal:  Nat Rev Genet       Date:  2008-05       Impact factor: 53.242

3.  [Citizens' veillance on environmental health through ICT and Genomics].

Authors:  Mariachiara Tallacchini; Annibale Biggeri
Journal:  Epidemiol Prev       Date:  2014 Sep-Oct       Impact factor: 1.901

4.  Malondialdehyde-deoxyguanosine and bulky DNA adducts in schoolchildren resident in the proximity of the Sarroch industrial estate on Sardinia Island, Italy.

Authors:  Marco Peluso; Armelle Munnia; Marcello Ceppi; Roger W Giese; Dolores Catelan; Franca Rusconi; Roger W L Godschalk; Annibale Biggeri
Journal:  Mutagenesis       Date:  2013-02-27       Impact factor: 3.000

Review 5.  From patients to partners: participant-centric initiatives in biomedical research.

Authors:  Jane Kaye; Liam Curren; Nick Anderson; Kelly Edwards; Stephanie M Fullerton; Nadja Kanellopoulou; David Lund; Daniel G MacArthur; Deborah Mascalzoni; James Shepherd; Patrick L Taylor; Sharon F Terry; Stefan F Winter
Journal:  Nat Rev Genet       Date:  2012-04-03       Impact factor: 53.242

6.  Information access. Raw personal data: providing access.

Authors:  Jeantine E Lunshof; George M Church; Barbara Prainsack
Journal:  Science       Date:  2014-01-24       Impact factor: 47.728

7.  Web-based, participant-driven studies yield novel genetic associations for common traits.

Authors:  Nicholas Eriksson; J Michael Macpherson; Joyce Y Tung; Lawrence S Hon; Brian Naughton; Serge Saxonov; Linda Avey; Anne Wojcicki; Itsik Pe'er; Joanna Mountain
Journal:  PLoS Genet       Date:  2010-06-24       Impact factor: 5.917

8.  Redefining genomic privacy: trust and empowerment.

Authors:  Yaniv Erlich; James B Williams; David Glazer; Kenneth Yocum; Nita Farahany; Maynard Olson; Arvind Narayanan; Lincoln D Stein; Jan A Witkowski; Robert C Kain
Journal:  PLoS Biol       Date:  2014-11-04       Impact factor: 8.029

9.  Public access to genome-wide data: five views on balancing research with privacy and protection.

Authors:  George Church; Catherine Heeney; Naomi Hawkins; Jantina de Vries; Paula Boddington; Jane Kaye; Martin Bobrow; Bruce Weir
Journal:  PLoS Genet       Date:  2009-10-02       Impact factor: 5.917

Review 10.  Subjects no more: what happens when trial participants realize they hold the power?

Authors:  Paul Wicks; Timothy Vaughan; James Heywood
Journal:  BMJ       Date:  2014-01-28
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